Finding the Right Out-of-Home Placement for Your Child with Prader-Willi Syndrome

Shelby was an expert in Prader-Willi syndrome. She had to be; her son Wyatt had been diagnosed when he was three, and though they’d seen dozens of talented doctors, therapists, and counselors over the years, none of them specialized in PWS. It was understandable given the rarity of the disorder, but it meant that Shelby, like most parents of children with PWS, had to come to appointments and meetings armed with every scrap of knowledge she could muster. She knew as much about the symptoms and management of PWS as most of the professionals they’d worked with, and more than many.

But at the moment Shelby wasn’t thinking about all the facts and strategies she’d learned. Standing on the front steps of the Shady Oaks Long-Term Care Home*, she knew instinctively that this was not the place for her son. She couldn’t articulate, even to herself, how she knew. It was a feeling, a queasy discomfort deep in the pit of her stomach that was so intense she couldn’t help but trust it. She stood staring at the doorbell, unable to force herself to raise her hand to push it.

Then Shelby gave herself a mental shake. You’re being ridiculous, she chided. Your son is in that house—what are you doing just standing here? And after a sharp intake and release of breath, Shelby rang the bell.

Wyatt had been at Shady Oaks for less than two days, but it felt like eons to Shelby. The state of Tennessee had placed him there after he’d been arrested for shoplifting. It was the frustrating culmination of a long battle with the state to get Wyatt into out-of-home care; this is not how Shelby had hoped it would turn out. Shady Oaks wasn’t a home for those with PWS, had never even had another resident with the disorder, but it was the best the state could do for emergency placement. Only temporary, the social worker assured Shelby. He’d be on his way to just the right place in no time.

The Shady Oaks staff member who greeted Shelby was friendly enough and chatted amiably as she led Shelby through the foyer, but didn’t introduce herself. When they came into the main common area, the woman told her Wyatt would be out in a moment, gestured toward an armchair, and walked away down a corridor.

Shelby sat and looked around while she waited. She saw a staff member standing at a table by the window. After a moment, she realized with a start that he was pouring himself a cup of coffee. There was a huge basket on the table full of sugar packets, another full of tiny shelf-stable tubs of cream, and an extra-large container of Coffee-Mate. Shelby clenched her teeth. She knew that Shady Oaks didn’t specialize in her son’s disorder, but this was Prader-Willi syndrome 101: Don’t leave food lying around, not even non-dairy creamer.

Her eyes now sharpened to any potential problems, Shelby scanned the room again. In the corner was a coat rack, and among the jackets hung two purses. Were those always there? Who was watching them? Wyatt had stolen money to buy food in the past, and he’d do it again if he had the chance. The point of out-of-home care was to provide Wyatt an environment where everything was scrupulously managed, but this place seemed less safe for him than his home.

But it was only the third day. Maybe she could talk to the directors and get them to change some things. What was important now was Wyatt. By the time her son came into the room, Shelby was ready with a smile and a hug.

The next morning before Alan went to work, Shelby and he sat in the kitchen with the phone on speaker and called Dr. Connors, the clinical director at Shady Oaks. Shelby told him about her concerns, and Dr. Connors assured them that these had been merely oversights during the transition period. This wasn’t a PWS home, he said, so staff needed to be trained, but the training process was already underway.

“By the end of the month, all of the upper level staff will have completed a PWS workshop so that we’re all on the same page with Wyatt’s treatment.”

Shelby opened her mouth to ask about the workshop, but Alan broke in.

“The end of the month?’” he echoed. “But Shady Oaks is just temporary placement. How long do you all expect Wyatt to be there?”

There was a pause on the other end of the line. Shelby and Alan looked at each other, and Shelby knew the doubt she saw in her husband’s eyes was the same as he saw in hers.

That doubt was well-founded. The following week, Shelby was out back in the garden when she heard the front door slam. Her heart pounding, she dropped the seedlings she was holding and ran inside to find Wyatt, panting with exertion, flopped on the living room couch. He’d escaped from Shady Oaks, taken the bus, and walked three miles along a busy road to get home. Shelby knew he would have to return, but part of her simply wanted to keep her son with her, by her side as he had always been since infancy. In the end, she let him rest until Alan got home, and then the two of them managed, after a long argument and an angry tantrum, to coax Wyatt into their pick-up. He didn’t speak to them the whole fifty miles, and when they parted at Shady Oaks, he refused to say good-bye.

Out-of-Home Placement Decision Podcast

In this podcast, parents of three Prader-Willi individuals share their decision to seek out-of-home care for their children, and the resulting struggles with local health care systems to find appropriate placement.

Listen to this 13-minute podcast and hear Rob, Joan, and Tyma's stories of:

- Learning and abiding by the strict guidelines needed by Prader-Willi individuals

-Becoming the best advocate for their child's well-being

- Finding out-of-home care that allows growth and satisfaction for their child

At the ensuing meeting, Dr. Connors apologized profusely. This, he promised, was the result of a terrible oversight. A staff member had forgotten to set the upstairs alarm, allowing Wyatt the opportunity to crawl out the window, drop down onto the roof of the porch, and jump to the ground unnoticed. Shelby wanted to know why someone hadn’t been with Wyatt at the time; he was supposed to have one-on-one supervision. That, Dr. Connors said, was an oversight, too.

Wyatt escaped two more times; getting him back to the home became a physical battle so intense it required Shelby’s husband and both her other sons. Two days after the third escape, Wyatt went on a rampage through the Shady Oaks building. He’d taken the steel-toed boots he wore to work on his grandmother’s farm with him to the home; Shelby hadn’t fought Wyatt about the boots because she assumed the staff would confiscate them. They didn’t. One morning after getting into a screaming match with a staff member, Wyatt jammed the boots on his feet and stomped into the hall outside his room. Shady Oaks wasn’t an institutional building, just an ordinary faux-Tudor house the state had bought at a foreclosure auction. The walls were made of sheetrock; a kick with even moderate force from Wyatt’s boots was enough to gouge huge holes in it. Wyatt kicked in the wall all the way down the hall. Then he barged down the stairs, smashing drywall as he went, all the while screaming at the top of his lungs. When he reached the kitchen, he body-checked the only staff member in the room and threw everything he could get his hands on. He wrenched open the cabinets and flung out plates and glasses, pots and pans. He heaved the toaster oven through the picture window over the sink. He shattered the coffee pot against the countertop; shards of glass floated in spreading pools of warm coffee on the floor.

The regular staff wasn’t prepared to deal with this kind of rage. Most of their residents were frail and senile. Wyatt was another matter. He was 19 years old, weighed nearly 300 pounds, and once he got riled, never responded to soft-voiced reasoning. The staff called the police, and it took three burly officers to restrain Wyatt enough to get him into the squad car. They took Wyatt to the jail in Nashville, then released him to a psychiatric ward at a local hospital. Staff there didn’t have the experience or resources to deal effectively with PWS, so their only recourse was to keep Wyatt heavily medicated. Every time Shelby visited him, it seemed that a little more of the son she knew had slipped away, retreating behind swollen cheeks and vacant eyes. Shelby would come home and flip through photo albums to find pictures of her son from better times; she needed to see him as she knew he really was.

Meanwhile, none of the state authorities seemed to be making any progress on finding Wyatt another place to live, mostly, it seemed to Shelby, because no one had tried. One afternoon, after another phone call ended with her near tears, Shelby opened her laptop and found a website she had bookmarked years ago. It was the site for Prader-Willi Homes of Oconomowoc, a network of residential facilities in Wisconsin. Not only did the homes specialize in PWS, it was the only disorder they treated. In all her research, Shelby had never found another place so devoted to people like her son. And everything she read about the homes was full of glowing praise. Shelby had mentioned PWHO to the social worker who was managing their case, but the woman had dismissed the idea.

With an air of defiance that made her feel more purposeful than she had for months, Shelby punched the number from the website into phone.

“Prader Willi Homes of Oconomowoc. This is Diane.* How can I help you?”

Shelby froze, momentarily stunned. She had expected another automated answering service, not a real person on the other end of the line.

“Yes, yes, this is Shelby McCaffrey. I—my son—” Shelby broke off. It was so hard to know where to begin.

“Take your time, dear,” Diane said.

It was the “dear” that undid Shelby. Tears sprang to her eyes, and suddenly she found herself crying and telling a woman she’d never met every detail about Wyatt: the bullying he’d suffered at school, the violent outbursts as he got older, the secret midnight visits to the gas station, the placement, the escapes.

“And I guess I just don’t know what to do anymore,” she finished. “I know this isn’t right, but we’re stuck. What other options do we even have?”

“Before I say anything else, I want you to hear this.” Diane sounded kind but also authoritative, and Shelby felt a fraction of the tension go out of her shoulders. “You aren’t alone, Mrs. McCaffrey. We hear these stories from parents of children with PWS every day. I can only imagine how frustrated and worried you must be, but I’ll also say this: it’s nothing we can’t handle. This is what we do.”

Shelby bit the inside of her lip to keep back a fresh wave of tears. It took her a few minutes before she was able to say, her voice rough and unsteady, “I just want him to be happy and safe. I thought I could do that for him. ”

“You did. But Wyatt may need some different support now.” Diane paused. “I don’t know if this will help, but can I tell you a story? It has a happy ending.”

“Yes,” Shelby said softly. “Please do.”

“We have a resident who came, oh, I guess about three or four months ago now, and he had been having a really hard time. Just about everything you’ve said your son is struggling with, this young man was, too. He and his parents had tried a half a dozen homes in his state, and he just kept running away. You know how hard it is for a home that doesn’t specialize in PWS to really know how to handle it.”

Shelby nodded even though she knew Diane couldn’t see her. Diane continued.

“Well, they finally came here for a visit. I was there that day, so I went out to greet them when they pulled up out front. They get out of the car, and I can just see that this young man doesn’t want anything to do with us. His poor parents look so nervous, you know they’ve been through so much already, but their son—” Diane chuckled, but stopped abruptly. “I’m sorry. I don’t mean to laugh. I was just thinking of that look on his face—so stubborn!”

Shelby smiled wryly, thinking of Wyatt’s own obstinate expression.

Diane went on, “So they come in to the home, and the young man is complaining and dragging his feet. His parents and I stop by the front desk to get some paperwork, and suddenly we realize he’s walking past us. Well, his parents start to panic of course, but he wasn’t running away—he’d seen two other residents working on a puzzle in the common room and he went to join them. They worked on that puzzle together for at least an hour. And you know what? When it was time to leave, he had a tantrum because he didn’t want to go!” Diane laughed again. “If there has to be a tantrum, I guess that’s the best kind you can have!”

Shelby swallowed hard. It sounded too good to be true. “How is he now?”

“Oh, you wouldn’t even recognize him! He’s making a lot of progress on his weight goals, but mostly it’s just his face: he looks happy. Now, that’s not to say things haven’t been difficult. But we’ve had a lot of success managing this young man’s behavioral problems with coupons.”

“Coupons?” Shelby asked, her brow wrinkling. She was imagining slips of paper clipped from the newspaper for fifty cents off Kleenex boxes or canned soup.

“Well, we call them that, but they’re really just incentives. When this young man was able to achieve some of his behavioral goals, he could get a coupon for something he enjoyed. I have a list of them here somewhere.” Shelby heard some paper shuffling in the background. “Ah, yes, here it is. Going for a shave and a haircut. Shopping with gift cards that he got for Christmas. Finishing making a fleece blanket. Playing with one of the staff’s dogs. I’ve gotten to take him on his outings several times. A few weeks ago it was a pedicure. Some of the girls from the sister home had done that and he thought it looked like fun, so we thought, ‘Why not?’ So I took him to the salon and he got his toenails painted red and green for Christmas.”

Shelby laughed with Diane, a real laugh that wasn’t colored by any of the worries that had crept into every word and expression for months. For the first time in a long time, Shelby could sense hope rising in her chest.

*Shelby and Wyatt’s story is a based on interviews with the mother of a boy with Prader Willi syndrome. Names in the story have been changed to respect the privacy of those involved.

Parents may often find themselves resorting to ultimatums, threats of punishment, removing privileges, or simply throwing up their hands when their child with special needs is having a meltdown and exhibits demanding or irrational behavior. Before exercising rigid authority, which often worsens challenging behavior, parents can instead use personal coping strategies to help themselves stay centered and focused so they remain calm in the face of conflict and, in turn, help their child become more calm as well.

Parents may often feel
challenged when raising a child with special needs. But when there are other
children in the family and that special-needs child has a sibling, parents often
feel even greater stress when trying to give both children the time, support,
and attention they need.

A seven-year-old girl's increasingly extreme self-injurious behavior requires understanding, thoughtful solutions, and careful planning. After a very challenging period of time, Lyla* receives the adult understanding, special education, and therapeutic care she needs to keep herself safe from her own harm.